It is very encouraging to see how many people, young and old, who just LOVES my dad. He goes to graduations, weddings, gatherings etc...He is invited to a Anniversary this Saturday which will be very formal. He has a 'life'. Sometimes when I think he will be home, relaxing- he has an invite.At any rate, it's good to know you're not alone, and it's 'normal' to feel as I do because I love him and so many others do as well.

I, too, am very close to my father. My only sibling is 11 years younger than me, so I was an only child most of my childhood. I know exactly how you feel-- I generally don't talk to other people about how I'M feeling about it, but occasionally it's really cathartic to just tell someone that you're actually not ok when they ask you you're doing. It breaks my heart to see my father so sad and my mother feel so helpless, and sometimes I feel guilty that I haven't had children yet. But I also know how much it upsets him to see me upset. And other people-- my father's friends, mostly-- can't keep from crying when they talk to me and I'm not really sure what to say to them. That, or they ask me a lot of questions about him because they don't want to upset my mother; it's like it never occurred to them that it might upset me to talk about it. But I know they mean well, and it means the world to me to see that so many people love him and care about him. That has been so wonderful to see.

All we can do is what we can do, I guess. Just take comfort everywhere you can.

The first visit to MDAnderson was in August this year. He was considered unknown primary. At that time, they consulted to decide which specialty of the hospital he should go to: unknown primary or liver or something else. I think they do this with cholangio since it is a difficult diagnosis. From that point on, it was pretty smooth-- especially considering how busy they are.

He is on a plane to Houston right now, and I know there have been some scheduling SNAFUs, and the doc he has been seeing (the male Dr. Brown) is leaving the hospital, so that's probably the cause of some of it.

I would warn you of one thing: since we live in NW Arkansas, and my father enjoys his work and has been able to continue working, he decided to take his chemo here. He got the protocol from Dr. Brown and worked with a local onco. However, when some complications arose (mainly the ascites), my mother called Dr. Brown and they told her that Dad wasn't his patient as such-- the onco here is his doctor on a daily basis, since he's not actually taking the treatment in Houston. It makes sense; I think my parents were just under the impression that the docs at MDA would monitor him throughout. This may be totally different if a big hospital like Baptist works very closely with them.

Caroline-- I have looked at your blog, noted your good experience with the Xelox and with Zoloft and have passed this on to my father. I worry that some of his difficult appetite might be related to some depression, though on his better days and in the mornings, he has a very good, if slightly morbid, sense of humor about it. The bad days following the recent surgery were just very bad. As for treating the arthritis, the maintenance dose of prednisone and the hydromorphone seem to be taking care of a lot of it.

First of all, I am 52 and have multiple tumors in my liver. I had one large one which was removed a little over a year ago, but more grew back right away. I am on Gemzar, Xeloda, and Avastin. I would say if your father is stable, then he should continue on chemo, and work with MD Anderson if necessary. CC is so rare that I think treating it can be overwhelming to some doctors who don't have a lot of experience with it.

I have a friend in Denver with slow-growing pancreatic cancer which she has dealt with for four years. She had an ulcer last fall that was life-threatening - probably the result of being on Tarceva for so long. Some chemo can pose a risk for ulcers.

As for Ibuprofen, I know it can affect platelets (which is an issue being on chemo) and Tylenol is hard on the liver, so I now take them as sparingly as possible and alternate between the two. Aspirin is supposed to be deadly on platelets. I have Oxycodone for pain if needed, but it can cause nausea, constipation, and it kind of knocks you out.

The Martin Family blog on this site talks about her experience with Xelox at MD Anderson. I believe the Xeloda has done most of the work in stabilizing my cancer.

Kris - I can't remember if you are from Natchez, MS, but I talked to my sister-in-law who is a nurse at Baptist Hospital in Jackson, MS. She says Baptist is one of the best hospitals in the region for cancer and they are affiliated with MD Anderson. Leslie, my sister-in-law, is an awesome nurse. Sometimes I wish I could be treated at her hospital because I know she'd be on top of everything.

I guess that's it for now. I just try to concentrate on enjoying life and not get too down. I did start taking Zoloft back in May to help with depression. I wish I'd taken this stuff a long time ago!

Good luck everyone!

-Caroline Stoufer

]]>Thu, 18 Jan 2007 16:18:57 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1491#p1491http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1489#p1489
Dear A - Can I ask you how your Dad's experience at MD Anderson was? We are trying to get my husband an appt. there. He is 41 and was just diagnosed in Dec. We have overnighted all this scans and results now I hear they have to "consult" about him and get back with us to see if they can help us? Is this how it went for you? If they feel they can help us, I guess that is when they give us an appointment?

Sorry so many questions but all you members on this board have been invaluable to me. I hope your Dad has success on his treatment. I pray for all of us going through this horrible disease.

I read your post regarding caring for someone with cc. My father was diagnosed in Jun 05. Since that time, I can hardly concentrate. My only concern was trying for find a cure. I am the only child of both parents. My dad is my best friend. He love me so much and I love him so much. I think his main concern is how am I doing. When we first find out, we cried all the time we talked to each other for at least 6 months. We were both devestated at such 'horrible' news. I am married, with a wonderful husband and 2 boys, ages 5 & 10. Basically, I have no help in caring for my dad or making decisions on treatments for him. I just do a lot of research and tell him whats working. I have some very close friends that I talk to and cry to them often. But I decided when I feel really down, not to contact anyone. I don't want to make anyone else feel sad. It has been a rollor coaster for me. I have noticed that I have changed. I am very protective of my father. Sometimes he sound so sad and I can tell in his voice when he is not feeling well. Then I start feeling bad- inside. He has more good days than bad and I am so thankful for that. He has come a long way.Things with get better. The bible mentions there will be a time when no resident will say "I am sick". Isaiah 33:24. We can be assured that this is in the future, because we are still experiencing sickness. Charlene

]]>Wed, 17 Jan 2007 21:25:28 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1486#p1486http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1485#p1485
likewise...I'll keep you posted as well... ]]>Wed, 17 Jan 2007 05:08:55 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1485#p1485http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1480#p1480
Thanks to you all for your encouraging words. This is such a tough thing for all of us.

C-- It's funny how many parallels there are in our stories. My father will go back to MDA this week for follow up scans and I've asked him to ask about the work they're doing there with Xeloda and Oxaliplatin, especially since I've seen some success with it on this site and in the clinical reports. Keep us posted on how he is responding.

You will certainly be in my thoughts.

A

]]>Tue, 16 Jan 2007 15:18:04 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1480#p1480http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1478#p1478
Hi A, My dad was also diagnosed w/ cc in August. I'm 25 yrs old and I also have younger siblings. Sister, 18 and a brother, 16. When I was reading about how you've been trying to spend as much time as you could w/ your family (I also live about 45min. to an hour away from my parents) I couldn't help but feel something inside that made me relate to you...i've never really posted anything on this site before. My father was checked into USC in August and had the "whipple surgery" done lasting 14 hours...yes 14 hours. He spend about three weeks in the ICU. It was probably the most traumatic thing i've experienced, to see my dad, a strong headed man, lying in bed helpless. He spent a little over 2 months in the hospital. After being discharged we waited about two weeks and started his chemo. For a few weeks, things seemed to be okay...he had an appetite and he went walking almost everyday, Dr.'s orders to exercise. Then after Christmas his oncologist informed us the cancer had spread in 5 different locations and told us he only had 6 month left. His Dr. even suggested "hospice" care. So it's been about three weeks...my dad and the oncologist decided to continue chemo and see how his body will react to XELODA...he has another appointment this Friday, so we'll see how his body is reacting to this method. Be strong. You and your family will be in my prayers!

c

]]>Tue, 16 Jan 2007 06:29:39 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1478#p1478http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1441#p1441
I support what JeffG has said. Having been through a similar situation with my husband I understand your predicament. There are some things that you can do at this stage and they are not medical. Make him comfortable, show him you love him, (my husband's request at this stage was for what he called 'loving touch') Have a warm and positive attitude, that's 'chemotherapy for the soul'. If he feels better emotionally and psychologically, that's a result in my book. My thoughts and sympathies are with you. You can make a difference although it may not be what you thought.Patricia.]]>Thu, 11 Jan 2007 10:39:31 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1441#p1441http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1437#p1437
A- Stable no change is good in my book. But your right being optimistic/ hope is about all we have to keep on battling this CC. Their is no right or wrong way of dealing with someone who has a bleak out look except to try and remain hopeful that a cure is around the corner. From what you have mentioned, you are not doing nothing poorly. This is a very challenging journey and we all make the best choices possible. I have been battling this CC almost 8 years but it is starting to take it's toll on me as well; both physically and mentally. Getting connected with MD Anderson was a very good choice. Being a caregiver for someone diagnosed with a terminal illness can wear you out as well. Don't hesitate to ask for help from someone or get hospice envolved. I have a daughter your age and we watched a movie the other night not knowing the main character was going to die from cancer. I happened to look around and she was gone and I found her curled up in a corner crying her eyes out. She couldn't understand why God was doing this to me and when I explained that I was going to be okay irregardless, she explained your not going to be okay ,your dying. I just replied I have faith and have to accept reality as it comes to me. Sometimes Daddy's have to move on. So I guess I'm saying I can relate to the rollercoaster of emotional anguish and pain that's involved and you can't do it alone or be second guessing yourself as you will do your best and that is all you can do. Love and support is the best medicine in most cases. My prayers go out to you and your family.P.S. After that talk with my daughter I went home and shed afew tears myself. It's a two way street; I often feel like I'm a burden to my family but as long as I can I intend on being with them and cherishing any and all the good times I can. It's a tough pill to swallow girl so don't forget to lean on someone and have a good cry it helps. Again, God Bless you all! JeffG.]]>Wed, 10 Jan 2007 22:55:58 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1437#p1437http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1435#p1435
Hello all-- I have been reading the site for months now, ever since my father was diagnosed with CC in August. There's been so much great information and inspiration for me and for my family. But I haven't really been ready to post until now. We've had some major (not necessarily cancer related) setbacks that have left me not so sure where to go from here...first I'll give the background...Since I've never posted, it's kind of a long one...thanks for bearing with me...

My father is 56. In August, after months of tests and scans, he traveled down to MD Anderson (we live in Arkansas) and was told that he had CC, and that he actually had around 6 or 7 tumors on the liver, the largest being around 8 inches in size, and a few swollen lymph nodes (no biopsies done to confirm metastases there). However, the small part of his liver that was functioning, was functioning well. Needless to say, he was declared inoperable and he came home to pursue a course of Gemzar and Cisplatin.

(Thanks to this site...) We did contact Dr. Jenkins but he was unable to perform surgery. Meanwhile, my father started the GemCis and immediately felt better. He was able to reduce the ascites significantly with diuretics and started a maintenance dose of prednisone. His attitude was better, he was eating, his weight appeared to be stabilizing, and the only really distressing side-effect of the chemo-- constipation-- was starting to work itself out.

The week before xmas he was rushed into emergency surgery with a bleeding ulcer in the dudenum. It had also eaten through an artery. He was in ICU for days. The ascites came back immediately and eating has been difficult again. He's become much more depressed, but he has been trying. Today, though, the doc said he wouldn't give him chemo because "it's clearly not working." But the stomach ulcer was declared a side effect of the ibuprofen from the arthritis, the ascites are going down again with the diuretics, and the only CT scan since diagnosis shows no major changes. In my book, stable disease IS a good result, and he was feeling so much better before the surgery-- something both he and the doc seem to be forgetting. This was surgery anyone would have difficulty recovering from; the fact seems to remain that no one knows how he's doing until he has a more detailed scan at MDA, and while he doesn't need false hope, he also doesn't need pessimistic speculation.

I live about an hour away, and I try to spend as much time as I can down there helping out (my 16 year old sister lives at home-- I am 27-- and my mother has her own medical woes), but I'm not sure what to do now. Everyone here has sounded so optimistic but I have no idea how to deal with someone whose outlook is so bleak. He's willing to try clinical trials, and he's due to go back to Houston later this month. But I'm not sure what to do in the meantime except go to therapy to take care of my own poor way of dealing with things.

So that's it, really-- a long, drawn out story, and something that you may not have any advice for, but it's good to get it out there.

Thank you so much for all the advice and support that this website has offered-- it's been a constant source of encouragement and hope.